Thursday, November 6, 2008

Okay, so I haven't posted anything for a while . . .

. . . and I thought that maybe now is as good a time as any. =0)

Just to keep you updated, Isaiah has his appointment with All Children's next Thursday in St. Petersburg! We will get the lab results back at that time and Isaiah might be started on a low dose of steroids to help with the anaphylaxis (and maybe the rashes). Of course, Isaiah still has the rash around his mouth that he had at least 1 month before the last appointment.

I don't think the rash is fever blisters like they expected. He has also had bouts of rash on his back, near the diaper (like he did in Feb./March). Who knows? I am just hoping it's not a cycle - that was not fun - for Isaiah nor me! He hasn't been sleeping well, so please keep that in your prayers. He has been so tired and the bruising continues, now we are having sleep problems yet again. I feel so bad for the little guy! He also hasn't been eating much and, believe me, Isaiah can be a little pig! =0) We're lucky to have Isaiah eat one meal a day right now (he just doesn't want to eat even if you offer him his favorite foods).

Yesterday, we had Isaiah's IEP meeting. It looks like we will have some kind of therapy twice a week, starting on Monday. Isaiah will have therapy to work on life-skills (such as dressing, motor skills, and a few other social things). This part of therapy will be done over an hour, gradually increasing his attention span to about 10 minutes at a time (over a year). The second session will be for speech. Speech therapy will only last about 20 to 30 minutes, whichever Isaiah tolerates best. Again, the therapist will start with about 5 minutes per activity, then increase to about 10 minutes (again, it will take about a year).

The ladies who will be helping with Isaiah are really nice and Isaiah seems to like them. =0) I am excited to begin the therapy - maybe I will know a little more about helping him and my students! I still can't help but feel like I didn't do something right, like I should have been doing something else with Isaiah to help him learn these skills. I guess that's just the mommy part of me. I know that there are just some things I won't be able to fix and that there are things Isaiah will need help with . . . from other people. It's just hard to accept that reality (sheesh, and I thought this was going to be a light "post"). =0)

One of the cool things about the therapists coming to our home is their willingness to accommodate Isaiah. When they come to work with Isaiah, they will change into scrubs that they will leave with me to wash - to make sure they do not have something on them to cause Isaiah to break out or anaphylax. They will also wash their hands with our special soap to make sure they do not have any residues on their hands!!! Of course, I know how washing so much can lead to dry skin (you should see my poor hands), so I have Isaiah's special lotion already in the bathroom for them! =0) (I hope that helps, guys!)

It's so neat to be on the other side of this - to be the parent of the child receiving therapy. I know some methods, but it will be nice to get a refresher course! =0) It will also be nice to get the speech therapy portion of therapy.

On another note . . . I am finally almost finished reading the book, Potty Training in One Day. Okay, so it sounds too good to be true, but it's really not done in one day. It's actually introduced over a period of time (through our lovely Potty Scotty . . . a doll) and then once the child gets the idea from the doll, the child gets the chance at potty training. Now, Isaiah began potty training at the beginning of this year. He was showing a lot of interest and was really excited about going potty on the potty chair/big toilet, that is until he got sick. We were potty training about the same time that Isaiah started getting the horrible rash. He was doing so well, too! He was staying dry most of the day (apart from a few accidents here and there) and was doing both number 1 and number 2 (terms for discreteness) in the potty. He was so proud of himself, too! Until he got really sick. Then he decided that the potty was the enemy. He has only sat on it once or twice since then.

He will sit on his little potty, but he is just so tall that it doesn't work well. Yup, we have a potty that has never been used. Oh, yeh, there was one time where he accidentally did number 1 in his potty (diaper leak while he sat on it). So, I guess the potty has been used, you know, apart from putting toys in it! =0)

Anyway, we have had the book and the doll for a while, but Isaiah just wasn't interested in it. Initially, I thought that I could introduce the doll, then Isaiah might just catch on. Well, he caught on . . . . just not the way I thought he would (he likes the doll using the potty . . . and Blue). =0) I guess that means mommy should have read the book. =0) I am almost done, and Isaiah has gotten a kick out of me narrating it to him!

That's everything that has been going on here, at least right now. I will post more a little later on . . . I know I haven't posted in a while. I kind of missed the last "Not Me Monday" and the last few "Wordless Wednesdays". I will work on it . . . =0)

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Isaiah 58:8-9

Then your light will break forth like the dawn,and your healing will quickly appear;then your righteousness will go before you,and the glory of the LORD will be your rear guard.Then you will call, and the LORD will answer;you will cry for help, and he will say, "Here am I".

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Isaiah-isms =0)

This is our new addition to the page - Isaiah-isms. He can say some pretty funny things . . . it's a tad scary, all those thoughts that have been locked up for so long . . . . =0) Here are a few of the things Isaiah has been saying lately . . .

"You can't be sad when you poop, Mom!"

"I got a chicken-cups, eeep!" (hiccups)

"I not go to bed ta-day!"

"To if-fibiddy an beyon!" (thanks, Buzz Lightyear!)

"I can't wanna do it."

"Take it-ta da top and cha-cha-cha!" =0) (I have no idea where that came from, but he's too cute when he says it!) =0)

"La hoo-hah-rah-cha, la hoo-hah-rah-cha. An he needs a get a kit-tar!" (kit-tar = guitar) =0)

"Dri-ben tuh Tord's tar-by!" (I'm in the Lord's army . . .)

"Aaaaaaagh! You're a muggering me!" =0)

"Lord Jesus to play!" ("Lord, teach us to pray.") =0)

"I hab wubed you with an eber-asting wub." ("I have loved you with an everlasting love.") =0)

Isaiah

In addition to severe food and environmental allergies, Isaiah has also been diagnosed with systemic mastocytosis. The combination of the two is unusual and seem to irritate each other - the allergic reactions are are worse because of the masto, and the masto reactions are worse because of the allergies.

A little about Mastocytosis . . .

Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body. It can affect just the skin or it can also affect internal organs such as the stomach, lungs, and intestines. Instead of being an autoimmune disease, mastocytosis is considered to be a myeloproliferative disease in that the bone marrow is producing too many of a certain type of cell - in this case, mast cells. Some of the possible symptoms of mastocytosis look a lot like food or environmental allergies. A person with mastocytosis may be convinced that they have food allergies but the antibody tests may be negative.

According to FAAN, "an anaphylactic reaction may begin with a tingling sensation, itching, or a metallic taste in the mouth. Other symptoms can include hives, a sensation of warmth, wheezing or other difficulty breathing, coughing, swelling of the mouth and throat area, vomiting, diarrhea, cramping, a drop in blood pressure, and loss of consciousness. These symptoms may begin within several minutes to two hours after exposure to the allergen, but life-threatening reactions may get worse over a period of several hours.

In some reactions, the symptoms go away, only to return two to three hours later. This is called a “biphasic reaction.” Often these second-phase symptoms occur in the respiratory tract and may be more severe than the first-phase symptoms. Studies suggest that biphasic reactions occur in about 20 percent of anaphylactic reactions."

Watch my Autism Speaks video message

My Dad (aka Grandpa . . . okay, so he's Ye-Ye)

A little about Waldenstrom's Macroglobulinemia

Waldenstrom's macroglobulinemia is a rare, chronic cancer that is classified as a plasma cell neoplasm. It affects plasma cells, which develop from white blood cells called B-lymphocytes, or B cells.

B cells form in the lymph nodes and the bone marrow, the soft, spongy tissue inside bones. They are an important part of the body's immune (defense) system. Some B cells become plasma cells, which make, store, and release antibodies. Antibodies help the body fight viruses, bacteria, and other foreign substances.

In Waldenstrom's macroglobulinemia, abnormal plasma cells multiply out of control. They invade the bone marrow, lymph nodes, and spleen and produce excessive amounts of an antibody called IgM. Excess IgM in the blood causes hyperviscosity (thickening) of the blood.

Waldenstrom's macroglobulinemia usually occurs in people over age 65, but can occur in younger people. A review of cancer registries in the United States found that the disease is more common among men than women and among whites than blacks.

Some patients do not experience symptoms. Others may have enlarged lymph nodes or spleen, and may experience fatigue, headaches, weight loss, a tendency to bleed easily, visual problems, confusion, dizziness, Alzheimer's-like symptoms, and loss of co-ordination. These symptoms are often due to the thickening of the blood. In extreme cases, the increased concentration of IgM in the blood can lead to heart failure (taken from http://www.iwmf.com/WhatIsWM.htm).